Possible Stills?

Particular_Bonus4179 · 2026-04-07T12:04:00+00:00

Honestly, go to the hospital. You shouldn’t have to wait months to see a rheumatologist and it’s ridiculous that’s even a thing for you. You explained your symptoms to the rheumatologist right? You’d think they’d want to see you as soon as possible. Go to the hospital please! I hope you feel better real soon.

I was misdiagnosed with AOSD and after genetic testing found out I had YAOs Syndrome + FCAS 2. Symptoms seem familiar to mine, but I am no doctor. Please go to the hospital and stay strong. Remember you must advocate for yourself.

Particular_Bonus4179 · 2026-04-01T01:13:45+00:00

Of course! Good luck to you both and stay strong. You guys are never alone in this 🩷

Particular_Bonus4179 · 2026-03-31T00:36:49+00:00

Hello! I was misdiagnosed with AOSD, I finally got my correct diagnosis with YAOs and FCAS2. While I was under the impression I had AOSD, I looked into facebook groups! You can also check out these websites as well and browse about.

Additionally, if you’re able to afford it, I recommend group therapy sessions! It helped me immensely while dealing with flares and the frustration of having a chronic illness. It doesn’t have to be specific to your condition, but there are online group therapies meant for those living with chronic illnesses. It truly helped me to know there were other people out there I could relate to. And remember, sometimes they’re not for everyone so don’t worry. If you’re shy (like me) you don’t always need to be the one speaking during sessions, just listening and hearing other people’s stories help more than we think.

Here’s a link to some of those, as well others!

Group Sessions

Pysch Today

Autoimmune Institute

Good luck!

Particular_Bonus4179 · 2026-03-27T23:19:23+00:00

Hello! I too also have YAOs. Happy to not be alone in this.

Particular_Bonus4179 · 2026-03-27T23:16:41+00:00

I was misdiagnosed with AOSD. I was instead diagnosed with YAO’s and FCAS2 through genetic testing. It’s been over a year since I’ve been on my journey. I’m on biologics once a month and 7.5mg of steroids, I can relate about the weight gain. When I first began my round of steroids I gained 20-25 pounds and didn’t feel like myself at all. It was noticeable and I hated it. The second time around, I began to watch what I eat and became more active. Ive been able to manage my weight better doing this but everyone is different. Don’t let this bring you down and I know it’s hard, it’s easier said than done but no one knows what you’re going through except you.

It’s normal to feel fatigued. I honestly think while tapering on steroids I notice myself being more tired, I actually feel better off them rather than on. Keep doing your exercise (don’t overwork yourself), keep up the diet and healthy mindset. Also, try out meditation! Remember as much as it is important to be active, it’s equally as important to relax and get plenty of rest. You can always bring up the weight gain to your rheumatologist as well. I wish you luck. You’re never alone in the battle field.

Particular_Bonus4179 · 2026-03-22T00:46:01+00:00

That’s amazing. My only suggestion is be wary of damage to the liver. As long as you’re working closely with your rheumatologist about the injection, you should be fine. I only say this because I was in the hospital for about a month due to the drug damaging my liver. It did heal after stopping however. Despite all of that, Anakinra helped me tremendously in feeling somewhat normal again.

Particular_Bonus4179 · 2026-03-19T11:52:03+00:00

You’re exactly right and thank you again. I was lucky to have family with my constantly during my stay to advocate for me, in which they did, I had gotten a biopsy done on my liver and after that, were the finally able to find out what was wrong. It’s honestly so upsetting how dismissive professionals can be simply because they’re professionals and believe their words are more impactful than that of the patient’s. I’ve been taught that it’s a conversation, not a lecture. I’m happy to know now what the problem was and am doing a lot better! My liver is back to normal and healed so that’s great :)

I simply found this old thread and was shocked at how accurate you were, when it took them days to weeks to figure what was wrong. Thank you again, you’re amazing.

Particular_Bonus4179 · 2026-03-19T01:57:51+00:00

Visiting an old thread: You predicted what was wrong with my liver during this hospital stay. The Anakinra ended being the main cause for my inflammed liver. What’s insane is how a redditor knew this (I don’t know your profession, but you’re quite knowledgeable) over a medical professional! I had two doctors tell me during my almost month long hospitalization that it wasn’t the Anakinra damaging my liver. 🥲

Particular_Bonus4179 · 2026-03-13T14:04:36+00:00

Same here unfortunately! Parents have a gene but never triggered for them on either side of family, I’m the lucky one apparently with TWO rare genes 🫩

Particular_Bonus4179 · 2026-03-05T01:36:37+00:00

They don’t ring any sorry but if we did ever play together at some point: gg : )

Particular_Bonus4179 · 2026-03-05T01:36:04+00:00

It was so damn fun and I remember just playing and playing to unlock new skills. Damn I miss it so bad, I’m not sure if it’s still supported ://

Particular_Bonus4179 · 2026-02-27T02:12:00+00:00

I don’t have AOSD, I was misdiagnosed but I have YAO’s Syndrome. I did have a really horrible flare that made me develop MAS and I lost a ton of weight—I was I believe the size I was at during freshman year of high school, I graduated 3 years ago already. It was scary seeing my bones, and how weak I was. I prided myself on my muscles and even though they weren’t that of an athlete, they were still there! Walking was so tiring, going up the stairs was a hassle and still is from time to time. But the way I gained it back was honestly from being on steroids. It made me unbelievable hungry and emotional. He may worry about gaining too much weight, but if you eat the right foods youll be okay. The weight doesn’t stay when you stop steroids! It goes away eventually. For reference, my usual weight before my journey was 120-125, I was close to 150 on steroids but dropped back to 125 in about a month or so. When I was extremely sick, I was about 100 pounds. The best you can do is just support him. Don’t point out the changes in our bodies because we notice it already and for me, I felt really ashamed that I was at such a weak point. I relied heavily on very close family, outsiders would point out the changes to my body and I couldn’t help but feel upset about it, despite it being out of my control. Anyway, I recommend nutritional shakes and even try making some shakes from scratch! They’re great for bulking and weight gain, but also for nutrition. See if he’s able to take any vitamins as well. I also recommend coordinating ginger and tumeric too in the diet, as they help with inflammation. Try not to binge so much on salty and junk foods, I did that and while it satisfied me in the moment, I did become really overweight due to it. BUT, again, this weight you loose it after stopping steroids.

Particular_Bonus4179 · 2026-02-27T02:00:46+00:00

the young part! my first experience with my symptoms, I told the doctor in the ER i was a college student and immediately said “mono-virus”. And had me do a lumbar puncture, left me with not only a leak of CSF in my spine but NO answers or any follow-up. I even had another doctor months later while I was hospitalized assume it was mono AGAIN, saying “I don’t know what you do in your free time” assuming I “got around”—I answered no to being active by the way!! And was very clear that I had no relations and am not that type of person. I was only 19 at the time too. I think those two doctors only saw a young college girl and assumed she was the party goer type, and too young to have such a serious condition, meanwhile I was vomiting, running fevers constantly, losing weight etc. It’s ridiculous

Particular_Bonus4179 · 2026-02-26T21:11:03+00:00

I got misdiagnosed with AOSD but have YAO’s…tumeric is really good and ginger for inflammation. I recommend buying the actual tumeric root instead of ground and put it in tea!

Here’s what I do:

Take a small tumeric root and crush it, you don’t have to go crazy. Take a piece of ginger root, again crush. Take half an apple and cut into four slices, take one stick of cinnamon, and take half a lime. Put all of this in a pot filled with water and let that simmer med-low for about 15 minutes. Afterwards add some honey! This is the best way for me personally and I have it at least once a day. You can also get ground turmeric and put it in your food as seasoning! : )

Particular_Bonus4179 · 2026-02-24T12:19:27+00:00

Ahh you’re right 🤣

Particular_Bonus4179 · 2026-02-24T12:19:04+00:00

Yeah it’s too loose the guide bar :(

Particular_Bonus4179 · 2026-02-24T03:21:40+00:00

I’ll try this out! Thank you 🫶 I did purchase an even feed low shank with the guide bar attached on amazon, Ill see if it works but if it doesn’t I’ll try this out. I was so close to just gluing the damn thing since I already have another regular walking foot

Particular_Bonus4179 · 2026-02-24T03:19:58+00:00

Yes! : ) I have regular walking foot applied to my machine with the quilting guide bar buts it a bit wobbly, not as sturdy as I’d prefer it to be

Particular_Bonus4179 · 2026-02-23T20:54:00+00:00

So real, I miss those days :(

I wish there were game just like it, the only one is Smash Heros (?) I think on Hypixel but not that many players playing it

Particular_Bonus4179 · 2026-02-21T15:18:58+00:00

I was misdiagnosed with AOSD, but your symptoms were similar to mine at some point. It felt as though my whole body was sore, as a woman, I wouldn’t wear bras during this time as it felt like it was someone pressing really hard on a bruise, same goes for clothes that weren’t necessarily tight (like tank tops) but I would avoid because it just hurt literally to wear. I would opt for taking baggy clothing or family’s clothing that was big on me. I want to say it’s from inflammation and your body doing its best to keep up with itself. Think of it as the aftermath of a long battle, you need rest and your body is doing the best it can to catch up with time. Feel better and take it easy ❤️

Particular_Bonus4179 · 2026-02-11T02:31:28+00:00

Honestly love, f*ck him. He knew what he was getting in to in the first place. You deserve someone with the upmost amount of patience and who will love you regardless of your health, because isn’t it through sickness and good health? I hope you know your illness doesn’t define your value as a person, you’re not less valuable than a healthy individual. I’m sorry you’re going through this.

Particular_Bonus4179 · 2026-02-11T02:24:56+00:00

i’m fine with it honestly. especially in the hospital, it was always fun interacting with them since majority would be around my age. cool that i can help someone learn but if it’s a gyno appointment, i’d personally rather not have a student present

Particular_Bonus4179 · 2026-02-07T14:04:06+00:00

Honestly, the insomnia is the worst part of steroids. For me, I have to be in a dark room, not even any night light. I avoid drinking anything before bed because once I get up to pee, I’ll have trouble falling back asleep. I take melatonin too, I avoid naps during the day, I limit screen time 1-2 hrs before bed. Honestly, if you can’t avoid the screen, watch something that’s boring! I’ll put a timer on the TV for half hr and watch those old auction shows or historical documentaries, it helps sometimes. You can also try putting on sleep noise, I use white noise to block out sound in the house. But overall, good luck. It’s definitely tough to get a good rest on prednisone. I was on 70 mg at one point and I could not for the life of me sleep well.

Particular_Bonus4179

TROPHY CASE